title: Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.
abstract: BACKGROUND
  Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed 'treatment burden' and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.
  
  
  RESULTS
  The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.
  
  
  CONCLUSIONS
  Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.
authors.affiliation: General Practice and Primary Care, Institute of Health and Wellbeing, University of Glasgow, United Kingdom.
authors.forename: Katie
authors.initials: K
authors.lastname: Gallacher
authors.forename: Deborah
authors.initials: D
authors.lastname: Morrison
authors.forename: Bhautesh
authors.initials: B
authors.lastname: Jani
authors.forename: Sara
authors.initials: S
authors.lastname: Macdonald
authors.forename: Carl R
authors.initials: CR
authors.lastname: May
authors.forename: Victor M
authors.initials: VM
authors.lastname: Montori
authors.forename: Patricia J
authors.initials: PJ
authors.lastname: Erwin
authors.forename: G David
authors.initials: GD
authors.lastname: Batty
authors.forename: David T
authors.initials: DT
authors.lastname: Eton
authors.forename: Peter
authors.initials: P
authors.lastname: Langhorne
authors.forename: Frances S
authors.initials: FS
authors.lastname: Mair
mesh_terms: D017281:Cost of Illness; D006801:Humans; D036301:Qualitative Research; D011785:Quality Assurance, Health Care; D020521:Stroke / Q000628:therapy*